If you regularly read what I write, you’ll know that whether you have a rare disease or not, I have similar emotions and thoughts as everyone else. Yet, the medical symptoms I experience from SMA must seem completely foreign to anyone who doesn’t live through it…
Columns
It’s been three years since COVID-19 lockdowns were implemented around the world. When that happened, time seemed to grind to a halt as the world intently followed the latest public health announcements. Plans were ripped apart as businesses all around us were shuttered. Three years later, as we’re still…
Machines are a vital and everyday component of my existence. There’s the BiPAP machine pumping air into my lungs when I go to sleep. It sits on my nightstand above my cough assist, another device designed to help improve my respiratory function. Then there’s my Jaco robotic arm,…
Note: This column describes the author’s own experiences with Evrysdi. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I never thought it would be this difficult to secure a life-altering treatment. This is about my best friend and…
While living with SMA, I’ve been on the receiving end of many people’s misconceptions about the disease. To an extent, I understand their lack of awareness; there are many diseases and conditions that I don’t know about, either. But there’s a fine line between not understanding the complexities of…
Our spring break kicked off on April 6 with an early release for students. I fell into the lengthy car line at 11:30 a.m. to pick up our grandkids, Clara, a first grader, and James, who’s in pre-K. Both had been giddily counting down to this time for days, especially…
There’s an old adage that says March comes in like a lion, but where I’m from, it comes in more like a tease. In New England, March is still cold and snowy, and it seems to drag on for much longer than 31 days. But as soon as the…
Regular readers of my column may know that I love Taylor Swift. I’ve written multiple columns explaining how her songwriting has given me solace. I still buy physical copies of her albums (even though my laptop has no CD drive), and I’ve attended her concerts each time she’s visited my…
I’m just a normal guy who happens to have physical limitations because of SMA. At least, that’s how I want others to see me. But is that how I see myself? I ask because I can be extremely hard on myself, sometimes even getting on my own nerves. Some…
Our granddaughter, Clara, sails through her page of first-grade sight words. She guesses wildly at times, but she’s usually quick to sound out most of the new words. I take opportunities to add bits of often-confusing trivia about homonyms, homophones, and homographs and relay some old stories. Clara prefers…
